Aa
letter writing campaign to CDC??
Dear Dr Frieden
I am sorry you did not include HCV on your priority list. I was recently infected presumably through a health care worker. If I can get HCV with my pristine lifestyle, then anyone can. I have no risk factors nor did I ever. I know it is natural for someone who recently presented with an illness to want to champion their cause, but this is not the case with me. I am most likely and luckily clearing spontaneously so I really have no other motive than to make it clear this disease is scary, especially how easily it is transmitted outside the drug culture.
It scares me to have found this out only because I frequently give blood. I urge you to reconsider the importance of learning more about Hepatitis, promoting routine testing for it, making the treatments available at little to no cost, and increasing public awareness. We incorrectly consider it a “druggie disease.” Those affected with HCV undergo scrutiny and ostracism like nothing else I have ever seen, and if you have HCV you have had to do SOMETHING BAD to get it. Even family and friends do not want to eat something you have prepared, use the same bathroom, share a dessert. It is a sad lack of knowledge that you at the CDC can improve. Once more of us present with the virus without a suspected mode of transmission, you will have to take notice of it.
HIV has received much attention, rightly so, meanwhile you have a silent public health threat sneaking in the back door. I think we have no idea how prevalent HCV is. Please do not ignore this disease because it is unpopular. Give the current and future sufferers of this disease some dignity and much needed help.
Thank you, Anne
I am sorry you did not include HCV on your priority list. I was recently infected presumably through a health care worker. If I can get HCV with my pristine lifestyle, then anyone can. I have no risk factors nor did I ever. I know it is natural for someone who recently presented with an illness to want to champion their cause, but this is not the case with me. I am most likely and luckily clearing spontaneously so I really have no other motive than to make it clear this disease is scary, especially how easily it is transmitted outside the drug culture.
It scares me to have found this out only because I frequently give blood. I urge you to reconsider the importance of learning more about Hepatitis, promoting routine testing for it, making the treatments available at little to no cost, and increasing public awareness. We incorrectly consider it a “druggie disease.” Those affected with HCV undergo scrutiny and ostracism like nothing else I have ever seen, and if you have HCV you have had to do SOMETHING BAD to get it. Even family and friends do not want to eat something you have prepared, use the same bathroom, share a dessert. It is a sad lack of knowledge that you at the CDC can improve. Once more of us present with the virus without a suspected mode of transmission, you will have to take notice of it.
HIV has received much attention, rightly so, meanwhile you have a silent public health threat sneaking in the back door. I think we have no idea how prevalent HCV is. Please do not ignore this disease because it is unpopular. Give the current and future sufferers of this disease some dignity and much needed help.
Thank you, Anne
Thanks guys - nothing you all have not been doing for years - i am just new and eager. - Yeah eureka - the nurses really shocked me - more than that actually - I guess I was very hurt by their reaction - well lack thereof
Hat's off, and good for you -- every voice counts, the more the better! Education IS the key.
And time to get working on some of those best friends of yours that are nurses! :) Health care workers (especially those in critical/trauma care) NEED to know and understand this disease, even more so to reduce transmission and risk for their patients and for themselves. It's a crying shame that for the most part both the general and medical populations are ignorant about hcv... and the best approach against ignorance sometimes IS one person at a time. And I remember that commercial too, but I think it was Fabrege? Whichever it is, it says something that we remember the lesson of the commercial but not the shampoo lol. ~eureka
And time to get working on some of those best friends of yours that are nurses! :) Health care workers (especially those in critical/trauma care) NEED to know and understand this disease, even more so to reduce transmission and risk for their patients and for themselves. It's a crying shame that for the most part both the general and medical populations are ignorant about hcv... and the best approach against ignorance sometimes IS one person at a time. And I remember that commercial too, but I think it was Fabrege? Whichever it is, it says something that we remember the lesson of the commercial but not the shampoo lol. ~eureka
You are not clumsy, you speak well and perhaps your approach is the most effective. I know you care. It's important for people of all walks of life to be helped with medical treatment and support form places like this forum I have seen the members respond without judgement so many times and too me it show's true compassion.
regarding HIV. people were dying at an alarming rate at the time. Thankfully what became a very loud voice got the government off their a$$. We don't have a very cohesive group in the HCV community so it's hard to find one voice even though the one voice is the infected voice. We have waited way to long for help. It atrocious!
Thanks for trying to make something happen!
regarding HIV. people were dying at an alarming rate at the time. Thankfully what became a very loud voice got the government off their a$$. We don't have a very cohesive group in the HCV community so it's hard to find one voice even though the one voice is the infected voice. We have waited way to long for help. It atrocious!
Thanks for trying to make something happen!
I really am trying to change the perception of HCV - I am not dirty or a drug addict - people think that - I am saying - I am not and still got this and even if I was, doesn't mean I should be thrown to the wolves. Other people do bad things to their bodies, are not scrutinized in the way we are, and are treated medically and socially better than we are. That is not right. My best friends are critical care nurses - the top in the field and have no idea what HCV is about.
They don't even ask how I am or if I need to be treated etc. They thought one gets HCV from shellfish.
That is what we are up against
They don't even ask how I am or if I need to be treated etc. They thought one gets HCV from shellfish.
That is what we are up against
My Dad has been in AA for 45 years and both of my brothers are alcoholics - one in NYC and a heroin addict My ex - husband threw me and his two sons away rather than get the help he needed. Choice? No - absolutely not. I know all to well the struggle facing people with addictive diseases. I love my family, know and understand to the bone how addictions are viewed by even the most "enlightened," I think that was exactly the point I was making - #1 - It is not a "druggie disease," if I, who does not nor have ever taken drugs, who does not engage in risky behavior, no tattoos, no pedicures, etc., has it, then we have to find out how the other 40% or so contract HCV. You see it yourself that people all the time are writing to this forum wondering if they got it from fingering prostitute. People absolutely don't know and it is incumbent, esp on the CDC to ensure knowledge is passed in a responsible way.
My second point was, because of the HCV stigma and lack of education, people automatically assume the only method of transmission is drugs. Because of this, there is not the proactive response you would have with other diseases that affected millions of people. People really need to be routinely tested for this - in my opinion. HIV - well Hollywood got into the act and made it a celebrity cause.
I am afraid for the baby boomers who do not know they have this. I am afraid that they really don't know as much as they should about HCV and they cannot study a whole bunch of us because we are not caught in the acute stage. I accidentally was and being in a teaching hospital you think they would be all over me wanting to know this and that and the progression etc.
I think I got it from a tetanus shot in a dr's office. The time fits, the doctor left the practice shortly afterwards. I think the more people like me who speak out saying that I have this and I am not a druggie so it's NOT a druggie disease, would open people's minds to making it more acceptable to treat HCV patients - and to treat them with dignity.
I didn't know this 3 months ago. I want to be your ally - and am - maybe I am clumsy with how I express myself but I also feel I clearly stated that I am pretty disgusted with how we treat those we feel have contracted diseases through less acceptable routes.
Please see my reply to Dragonslayer
Best, Anne
My second point was, because of the HCV stigma and lack of education, people automatically assume the only method of transmission is drugs. Because of this, there is not the proactive response you would have with other diseases that affected millions of people. People really need to be routinely tested for this - in my opinion. HIV - well Hollywood got into the act and made it a celebrity cause.
I am afraid for the baby boomers who do not know they have this. I am afraid that they really don't know as much as they should about HCV and they cannot study a whole bunch of us because we are not caught in the acute stage. I accidentally was and being in a teaching hospital you think they would be all over me wanting to know this and that and the progression etc.
I think I got it from a tetanus shot in a dr's office. The time fits, the doctor left the practice shortly afterwards. I think the more people like me who speak out saying that I have this and I am not a druggie so it's NOT a druggie disease, would open people's minds to making it more acceptable to treat HCV patients - and to treat them with dignity.
I didn't know this 3 months ago. I want to be your ally - and am - maybe I am clumsy with how I express myself but I also feel I clearly stated that I am pretty disgusted with how we treat those we feel have contracted diseases through less acceptable routes.
Please see my reply to Dragonslayer
Best, Anne
I appreciate your letter and I believe your heart is in the right place. The one thing I hear from people that are new to this forum is that I am not dirty or drug addict, how did I get this. As you know this disease crosses all sorts of line.
It is not easily transmitted as you say, and your case is not common, I am very glad you are conquering it and that you have come to care so much about the community. I know you didn't mean it this way, but we already have a problem with uninformed ignorant people believing they can catch this disease form touching door knobs and everything else possible. You had some risk factor, you just don't know what it is. And because very few people can actually get this from a dentist or unclean instruments or all the other ways that only very rarely occur does not make it common.
The other thing is that people with drug and alcohol addition are not dirty human beings that don't deserve the same treatment and chance of survival as the people who are clean and sober. Most people don't choose drugs and alcohol because that was what their hope and dreams for life were. Compassion and not judgment is what I believe they deserve.
Many of us like myself had drug problems 20-40 years ago or tried iv drugs a couple of times when the world was different, we didn't know about hiv and hcv and drugs were flowing freely in that particular culture. We made stupid mistakes.
Many of us are highly educated, successful and left the drugs and alchohol in our past ages ago, unfortunately hcv poked it's head into our life when we were parents and caretakers, professionals, poor people rich people, street people and basically your next door neighbors.
I have not used iv drugs for 30 years although i had a serious problem when I was young. I have not had alchohol for 12 years and don't smoke pot. I don't judge people that do any of those things or think they are any less them me though.
I know you probably didn't mean your letter in this way and that you care about this community and are trying to do something about it, much more then most people do and I really thank you for that.
There was a time that certain people espoused that gay people deserved to get aids and brought it on themselves. A very sad time in our history in my opinion. I know this still goes on, but not to the extent it used to.
Everyone deserves compassion, empathy, love and help and treatment and respect.
thanks for trying to help all of us!
- Dave
It is not easily transmitted as you say, and your case is not common, I am very glad you are conquering it and that you have come to care so much about the community. I know you didn't mean it this way, but we already have a problem with uninformed ignorant people believing they can catch this disease form touching door knobs and everything else possible. You had some risk factor, you just don't know what it is. And because very few people can actually get this from a dentist or unclean instruments or all the other ways that only very rarely occur does not make it common.
The other thing is that people with drug and alcohol addition are not dirty human beings that don't deserve the same treatment and chance of survival as the people who are clean and sober. Most people don't choose drugs and alcohol because that was what their hope and dreams for life were. Compassion and not judgment is what I believe they deserve.
Many of us like myself had drug problems 20-40 years ago or tried iv drugs a couple of times when the world was different, we didn't know about hiv and hcv and drugs were flowing freely in that particular culture. We made stupid mistakes.
Many of us are highly educated, successful and left the drugs and alchohol in our past ages ago, unfortunately hcv poked it's head into our life when we were parents and caretakers, professionals, poor people rich people, street people and basically your next door neighbors.
I have not used iv drugs for 30 years although i had a serious problem when I was young. I have not had alchohol for 12 years and don't smoke pot. I don't judge people that do any of those things or think they are any less them me though.
I know you probably didn't mean your letter in this way and that you care about this community and are trying to do something about it, much more then most people do and I really thank you for that.
There was a time that certain people espoused that gay people deserved to get aids and brought it on themselves. A very sad time in our history in my opinion. I know this still goes on, but not to the extent it used to.
Everyone deserves compassion, empathy, love and help and treatment and respect.
thanks for trying to help all of us!
- Dave
Awesome !! You are brave with Facebook. I have to be a bit sneaky in spreading the news since I am in the public eye here but it is also a good way to reach quite a few people.
I made my sons get checked and they in turn had their wife and girlfriend checked.
Good thing about your hair - I too have auburn/red hair and would hate to lose it.
Best, Anne
I made my sons get checked and they in turn had their wife and girlfriend checked.
Good thing about your hair - I too have auburn/red hair and would hate to lose it.
Best, Anne
I've posted pages from the HCV Advocate web site on my Facebook page, and sent copies to everybody in my email address book, especially after reading the news paper article about the Mayo Clinic in Jacksonville, FL. I urge everybody to get checked... I don't know how many have listened, but at least I tried.
I think you are right, the more people are exposed to it, the more aware they will become.
Diane
I think you are right, the more people are exposed to it, the more aware they will become.
Diane
Well I will most certainly blaze the trumpets. I too was one of those who never gave HCV a thought. When I looked up the causes of brown urine back in late Spring, I skipped over the HCV page since there was no way I was exposed. HA !! I am sorry to say that I was embarrassed, ashamed, couldn't even get the words out. My normally loving and supportive family and friends never ask anything - how I am feeling, what my next steps might be, is there anything I need, can they go to an appt with me. Had I diabetes etc., they would - most certainly.
I am not angry with them but I am angry with a system that discriminates based on what you night or might not have done. What about Twinkie eaters? They get clogged veins. Are they held accountable?
Mt Dad had been in AA for 45 years - one of the originals in this state anyway, and he faced much of the same discrimination. Knowing how hard it was for him to stop and how well he has done makes it difficult to hear in this day and age people saying things like "they did it to themselves." He is one of the best people I know and has helped so many others and to hear that type of ignorance makes me so angry.
Now I see it with HCV. I guess educate 1 person at a time. Like the old Breck(?) commercial - I told 2 people, then they told 2 people and so on and so on.
Well, again, I may clear, but I have learned an important lesson and will not be quiet.
I am not angry with them but I am angry with a system that discriminates based on what you night or might not have done. What about Twinkie eaters? They get clogged veins. Are they held accountable?
Mt Dad had been in AA for 45 years - one of the originals in this state anyway, and he faced much of the same discrimination. Knowing how hard it was for him to stop and how well he has done makes it difficult to hear in this day and age people saying things like "they did it to themselves." He is one of the best people I know and has helped so many others and to hear that type of ignorance makes me so angry.
Now I see it with HCV. I guess educate 1 person at a time. Like the old Breck(?) commercial - I told 2 people, then they told 2 people and so on and so on.
Well, again, I may clear, but I have learned an important lesson and will not be quiet.
Good for you! I agree that they are going to be pretty shocked in the next 10 years or so when all of the undiagnosed baby boomers are needing livers. Maybe then they will realize that they should have been checking every body as part of the routine tests.
Get dramatic all you want.
Diane
Get dramatic all you want.
Diane
It was just the rough draft but I did send something off this afternoon. I truly don't think they have a clue as to how many people are HCV positive. They will though when our age group gets into their 70's and discovers their livers are gone. Okay so that was a bit dramatic - lol
Best
Best
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